Wondering about MRI noise level at Georgetown University Hospital? As of June 19, 2019 Georgetown University Hospital Radiology offers music during MRI tests via FM radio only. It is not possible to bring your own music. There is no iPod / Device hookup and no CD player. For tests that require your head to be still, no music is usually possible. The earphones that provide the FM radio sound are big enough that most patients cannot wear them due to space limitations. Together with headphones, the cushions used to immobilize the patient’s head for a clean scan cause uncomfortable crowding. I was not able to get this information on the hospital website or from the radiology department phone operator. I hope this might help other patients who are wondering about how to best handle a long scan. All that said, the hearing protection provided plus barrier cushions for head immobilization made my scan experience entirely bearable. For some reason, MRI noise at Georgetown for a lumbar spine scan was much louder than upper spine and brain. My MRI experiences at Inova Mount Vernon were much louder than my Georgetown University Hospital MRI experience. That might have been blamed on lesser hearing protection. Just a tidbit from a gal dealing with a somewhat rare disease and getting some other mighty odd stuff looked into. Be well and healthy, and have a good test with Georgetown University Hospital Radiology.
Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself.
Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself. Important note: If weakened breathing or dangerous symptoms are coming into play, go to the hospital.
Care Guidelines for MG Strength
Helping out with strength should be a “no brainer” for caregivers aiding someone who has Myasthenia Gravis. That said, I’ll present another side of the puzzle. The lucky MG sufferer will have many days where they have normal strength and truly do not need help with normal, or even strenuous activities. On such days, try to rely on them actually asking for help if they should feel strength waning and only start to help then. It can become very frustrating to have an overly enthusiastic caregiver actually take away the diagnosed person’s “ability” by not letting them do what they can, when they can.
Typical strength aids include setting up a home environments that can be clearly navigated with the addition of possible safety aids such as railings in the bath / shower. Be sure to keep important objects on easy to reach shelves, ideally at or below shoulder height of the MG patient. Chairs placed strategically in the home are important for days when distance walking isn’t possible. A chair in or near the kitchen is also a big help for breaks during cooking or even simply when brewing coffee or tea. Taking it easy is a good way to stave off symptoms. Resting is a must when symptomatic. An important caregiver guideline for myasthenia gravis patients is to watch that the person you’re helping out doesn’t too hard.
Diet, Strength, and Myasthenia Gravis
When caring for someone with Myasthenia Gravis, diet is an aspect not commonly in the forefront of the mind as far as strength goes, but it can be an issue with MG. Here are some diet care guidelines for Myasthenia Gravis. On weaker days set up your grocery shopping list to avoid hard to chew and swallow foods like nuts and pork. Of course if swallowing is a current problem from MG weakness, Myasthenia Gravis caregiving including adhering to a new diet of pureed moist foods is necessary. As a caregiver, food should be cut as finely as possible, and consumed in small spoonfuls or bites. Liquids should be sipped slowly. One bit of Myasthenia Gravis advice in caregiving is to exercise patience with longer dining times.
Temperature Guidelines for Myasthenia Gravis
In my own experience having Myasthenia Gravis, the most sudden, surprising bad effects I’ve had have been caused by heat. Plain and simple. It is very important that someone with MG stay in a cool environment. Caregiver tip: seek out air conditioned environments. That is a hugely important guideline.
Personally, I start to suffer weak eyelids and fatigue in temperatures above 74 degrees. If I sit near enough to a hot lamp, my eyelids will simply start to close slowly, or at best droop slightly. Once on a day in the upper 80’s I thought I could get away with being outside long enough to pat some dogs and then sit on a bench for about 3 minutes. Imagine my surprise when I then collapsed getting into the arrived car, hitting my head on the side of the car roof. I ended up with a concussion. There was no warning that weakness was coming on, the collapse was so sudden. I had not followed my caregiver’s advice to stay inside until the car had arrived.
Made in the Shade
When outside on warm days, stay in the shade. Myasthenia Gravis care includes using cooling garb (gel pack neck wraps and even cooling jackets are best) in environments where air is warm-to-hot. Gel packs have a time limit on them and are still not as good as just being in a cool place, but they may give the diagnosed person a bit of freedom to get out and about. Drink iced liquids to keep body temperature down – water is best. These are all good items to have on hand in the car when traveling in warm climates. They serve as back-up cooling if a car breakdown occurs. Caregiver guideline for myasthenia gravis: Traveling as a Myasthenia Gravis patient can take planning and coordination.
Air conditioning is a must have in the home of an MG sufferer. Myasthenia Gravis pro advice: Call and inform your electric company that the household should get priority for getting power restored after an outage for health reasons. They have a form that can be filled out. Indoor air conditioners are a good solution for back-up during possible heating / cooling failures in communities that do not allow window unit air conditioners. If looking for a rental apartment, try to get a unit with individual heating / cooling control, so that you can switch from heat to cool without waiting for a building-wide switchover. Let the management know the rental is housing someone needing this Myasthenia Gravis care.
Guidelines for Less Stress
I cannot emphasize this Myasthenia Gravis aggravating factor enough as a part of MG care. Stress and emotional upset plays a huge factor in causing MG weakness and appearance of symptoms. If you know someone with Myasthenia Gravis, be a Mensch and leave them in peace. That’s really the kindest thing you can do emotionally in caring for someone with Myasthenia Gravis. We all know what general stress is, but as a caregiver you should also be aware of emotional stress.
Caregivers themselves can unwittingly cause stress. If you are caring for someone with Myasthenia Gravis, don’t be a “helicopter” caregiver. The disease takes so much freedom away from the sufferer that any bit of freedom and wiggle room is welcome. Of course it’s awful watching someone you love or care for go through the grim aspects of the disease, but symptoms fluctuate. It’s possible to have a really bad day and then be stronger the next. Let a good day Myasthenia Gravis day be a good day. It does happen. That’s a kind guideline in MG caregiving, and allowing and maintaining hope is an important part of Myasthenia Gravis advice.
Being Myasthenic Can Cause Stress
So stay calm and try to do a certain amount of riding out symptoms. For a newly diagnosed patient, it will take a while to recognize personal symptom patterns and causes. There’s new medicine to deal with too, and some are tricky beasts. Taking too much Mestinon can actually cause symptoms. Immediately upping Mestinon dosage with new symptoms is not necessarily the best way to go. Follow your doctor’s advice until you begin to recognize the ebb and flow of symptoms. Get in touch with your doctor if there is a trend for the worse. Try not to agonize about every change in symptoms. They may ricochet unpredictably from day to day and hour to hour. They also might not. You will learn to recognize when to worry and when not.
Doctors appointments can be very stressful for some MG patients. It is best if two people are at each neurologist appointment. This aids in understanding and can also act as moral support for the diagnosed patient. Another stressful aspect of neurology: What a neurologist counts as “strong” is not necessarily what normal “strong” is. In office visits, the emphasis is more on immediate weakness during testing. In the hospital, they probably won’t want to keep you inpatient beyond the time that a direct crisis emergency is being warded off. Other weakness is to be cared for at home, or out of hospital. Those are some hard facts of Myasthenia Gravis advice.
Caregivers should Respect Limitations
Respect the limitations of the Myasthenia Gravis patient. Another important Myasthenia Gravis caregiver guideline, especially for partners who are more active late in the day is to be patient with waning strength as the day goes on. In symptomatic phases, going out at night might not be the best idea.
Pay attention to medicine timing and help keep a regular schedule. In Myasthenia Gravis caregiving, when symptoms are bad, it’s easy for the diagnosed patient to lose track of time, or simply be a bit out of it, because they just don’t exactly feel perky. I always have my alarms for the day set the previous night on my cell phone, starting from my wake-up alarm time.
Long term caregivers should learn the person’s symptom patterns and sensitivities. Myasthenia Gravis care includes respecting limitations of the person you’re caring for. As a caregiver you shouldn’t be pushing them in a direction that might be disadvantageous.
That’s a wrap for my edition of caregiver guidelines regarding Myasthenia Gravis
If you’ve had this treatment suggested for Myasthenia Gravis, it’s likely that lesser treatments are failing you. Typically, Mestinon and / or steroids might not work, or be outruled. This treatment can be a big step for MG patients, as it requires a hospital stay for the blood antibody serum infusion. Thoughts of chemotherapy may come to mind. Scary! Here I will outline my experience undergoing the initial IVIG introduction, and give pointers for getting through follow up treatments.
If you’ve had this treatment suggested for Myasthenia Gravis, it’s likely that lesser treatments are failing you. Typically, Mestinon and / or steroids might not work, or have been out ruled. This treatment can be a big step for MG patients, as it requires a hospital stay for the blood antibody serum infusion. Thoughts of chemotherapy may come to mind. Scary! Here I will outline my experience undergoing the initial IVIG introduction, and give pointers for getting through follow up treatments.
What is IVIG?
IVIG is short for Intravenous Immunoglobulin. Simply put, it is the part of the blood with antibodies made into a serum, and mixed in a liquid suspension. This serum is administered by IV to the Myasthenia Gravis patient. The treatment is used for other diseases too, Lupus being one. Different diseases require different infusion dosages and intervals, but the procedure is as follows. Each treatment is thanks to one thousand to fifteen thousand blood donors who supply this precious commodity which the immunoglobulin is extracted from. Thank you donors!
Why is a hospital visit necessary?
If you are at the point of receiving IVIG for Myasthenia Gravis, it is likely that lesser treatments are no longer working for you. Some patients are in crisis and are started on this regimen. Others may be having symptoms that are becoming a great hinderance to life, bad enough to reach for “bigger guns.”
I was first suggested the treatment when I began to have to rely on a shopping scooter when out and about in stores. A cane was no longer practical. I delayed the decision, because of the expected 5 day hospital stay for the initial series of infusions. I don’t recommend this. If you’ve gotten this far, there is too much potential for things to go further south. 5 days in a hospital will rarely ever “just fit” into any of our busy schedules. I honestly couldn’t bring myself to commit to the hospital stay, for many reasons on top of this. It is daunting.
A hospital stay is necessary, so that the patient is in an observed medical environment while administration rate and tolerance are determined. It is not entirely predictable how the patient will react to the treatment. Things like blood pressure issues (high or low), headaches, and dizziness may occur. IVIG is a very thick liquid, so stroke might be an issue. Please be sure to have your doctor discuss these things (and any other factors I might have omitted here) with you. Myasthenia Gravis can actually get a bit worse during or shortly after the initial treatment. Yet another reason not to let things get too far gone before you even start your IVIG regimen.
When I was started on IVIG, I was in crisis and had a direct trip from the emergency room to the Constant Care section of the hospital. The ward had a “no fall” policy, so I was not permitted to leave my bed without help. “Constant Care” was a fitting name. There was contant monitoring, blood and stats testing, adjustment of IV flow, breathing measurements, and staff checking by. It was a mind-blowing whirlwind of introductions and action. At night there were 3 check-ins, but otherwise I had as much privacy as you can get in a hospital, given my ward set-up.
What does an IVIG treatment feel like?
I am happy to report that the material being infused does not burn, hurt, or cause any sensation in particular. You may get a Saline taste in your mouth. I had complete loss of appetite during the initial treatment sessions. Try to get food in before you start. Even if you are starving, you may be left with no appetite shortly after the drip begins. It IS important to keep energy up with a decent amount of food when already very weak with symptoms.
If you hate needles, sorry folks. With any luck you will have a chance to specify which arm you prefer for your IV. If you can’t talk when you are rolled into the ER, or have a sneaky med tech and are not asked this, “dems da breaks.” The needling doesn’t stop with the IV insertion. You’ll get blood thinner shots every 2 hours or so in the fattiest part of the arm. They sting, but I’ve had worse. The shots are given during night checks as well as during the day. I was black, blue, and yellow when I left the hospital. I have not received these shots in follow-up home treatments.
IVIG is pre-treated with Tylenol and Benadryl, to ward off potential headaches. I did have headaches a few days in care and my blood pressure was all over the place, when I usually run low. The headache was pretty intense. Now that I am better off, I am usually more woozy from the Benadryl than anything else. Although I usually power through this, I did have had the odd treatment or two at home where I was left laying my head on my desk with a bit of dizziness.
In 10 months of tri-weekly treatment, I have had a few cases of minor nausea and have not yet found how to keep my digestive system from being generally tetchy. In the hospital at night I had a few instances where I felt like a bucket by the bed might be warranted, although I did not actually vomit. If you do become nauseated in the hospital, there is medicine called Zofran that works well. The downside is that it causes constipation, so be as brave as you can without. Now, in home treatments, I tend to get combination constipation and strangely loose bowel on the days of and day or two following treatment. There may be a feeling of churning guts.
Tips for a More Comfortable IVIG Treatment
Drink water. Drink. Drink. Drink. As I stated above, IVIG is very thick. This means the body has to work a lot for it to flow through the veins. The more you drink, the less headache you’ll have, and I find my digestion is much happier during and after. Drinking a lot during treatment will help you avoid dehydration during and in the first day or 2 after treatment. That, in turn, makes your whole body happier.
If you are a hard stick (this is the Queen of Hard Sticks writing), drink plenty of fluids including a warm beverage before treatment. A shower of some warmth beforehand can also help, if your condition permits you. A heating pad around the arm beforehand also helps raise veins to the surface. I find the sicker I am, the harder my veins are to deal with. There are also differences in catheter quality. Your home nurses will be happiest with hospital quality sticks, as some home care providers seem to skimp on this material.
Another practical tip is one I insist upon anyway for mental health, and general positivity. If possible, keep yourself mentally occupied during treatment. It’s way too easy to sit and dwell on your lot in life when you have an infusion catheter stuck in your arm. Be thankful you’re getting the treatment and distract yourself. I chose to draw during my induction week. That creation ended up in 2 pieces. “Drip Drip Drip IV” is the design below.
My last tip is from hard experience. I have been extremely lucky in having what I feel is a great home infusion company. I had much different experience with home physical therapy. My “therapist” was not only very inappropriate, but was even visibly intoxicated once. He bragged often about what a wonderful physical therapist he was, insisting he never opened a book in PT school. <insert many question marks here>
I ended up cancelling his services by contacting his coordinating office. He texted and called for days after sounding like a problem ex-boyfriend, begging me to start back up. Before that point, when he called in sick for a stretch, I had a very hard time getting someone to come out at all. None of this is helpful when you are fresh out of the hospital from crisis. I’m sure none of this stress helped keep me from being hospitalized again 4 weeks later. If you have a bad feeling about any home care professional, CANCEL THEM and tell your doctor. The stress of such caregivers will not help your MG improve. A good doctor will put a note in to the hospital that this company be avoided.
If you’re this far, I wish you all the best. I will be honest in saying I have not gotten back to pre-crisis strength yet, but I did not die and have not been bedridden after a point. As I started typing this, IV in arm, I was on a 2 week long down-swing after a hot February day that had led to breathing problems again. By the second day of treatment, this had normalized and I started feeling much more human.
This process was initially combined with starting the drug Cellcept. More on my own experience using Cellcept plus information on Mestinon in my next post. Subscribe for notifications in your inbox. Thanks for reading. Stay strong.
A Myasthenia Gravis patient’s 20 year trek to get a correct MG diagnosis, including examples of misdiagnosis, descriptions of diagnostic tests, and personal recollections of dealing with the process.
Getting diagnosed with Myasthenia Gravis was a long, frustrating journey. My official diagnosis was brought down in 2009, but only after visits to a myriad of doctors and a lot of heartache. From neurologists, to endocrinologists, general practitioners, psychiatrists, counselors, and even a disastrous visit to the Cleveland Clinic, there were many trials and tribulations in my Myasthenia Gravis diagnosis story.
Now that I have a solid Myasthenia Gravis diagnosis, I recognize the symptoms easily. In hindsight, I believe I had been suffering MG since the late 90’s. That is presently about 20 years ago. My get up and go had just got up and went. I often had a puzzling symptom where I would suddenly lose my balance out of nowhere when standing still. I chalked it up to inner ear problems, and tried to make a point of being near something to lean on when standing. I knew to expect a pinball-esque trip navigating through crowds. Once an avid walker, I became more and more fatigued. Already then, although I had never been a fan of warm weather, dealing with Virginia Summers had begun to feel like death. I began to limit my time outdoors, much to the chagrin of friends and family.
My vision had gone to pot, as is shown by the painting below, which at the time seemed sharp to me. It was one of my more crisp images from the period and is even sharpened a bit in photographic editing here. Happily, this is a popular piece of mine.
Another example of myasthenic blur is represented by this photograph from September of this year, which I perceived as sharp at the time. The body and the brain have an interesting way of compensating. That’s all party of a typical MG diagnosis story.
Already in the 90’s, long before my Myasthenia Gravis diagnosis, driving had become a real problem due to visual anomaly. I managed getting around town, but anything at highway speeds was a game of strange, nerve wracking blurriness. I kept passing on the highway to a minimum. My peripheral vision was shot. It almost seemed like tunnel vision when in motion. I now know that it is probably a good thing I did ask for help with transportation. I was very lucky to have assistance.
Now, in 2018, I do not drive at all after several incidents of leg muscles not cooperating while behind the wheel. There was a startling, loud, but non-damaging collision that was viewed as intentional by the other driver, sitting innocently in her new car behind me. I was parallel parking, and hurtled into the parked car during the last reverse move. I meant to hit the brakes my leg didn’t move to the right position. My intended brake force became acceleration, and the resulting crunch echoed through the street. How humiliating to be outside the shop I was about to do business with for Melasdesign. No doubt stress and anxiety had weighed in here. The other driver was livid and only ceased attacking me verbally after an onlooker came from inside an establishment to defuse the situation. Additionally there were several close calls involving getting said leg to apply breaks in traffic. After that I hung up my hat.
Adding to the puzzlement in the search for correct Myasthenia Gravis diagnosis were the distracting health problems I already had. It seemed to make most doctors throw up their arms in disgust that I might suggest something more was up than what had already been diagnosed. I was sedated by psych meds for major depression and PTSD, which contributed to severe weight gain (and yes, they do increase appetite).
I suffer hypothyroidism. My endocrinologist finally found a happy balance of Synthroid at .3 mg after much experimentation. Later, a veteran hospital nurse saw the level and said it was the highest dosage of Synthroid he had ever seen. My Vitamin D values were low (a very important MG factor). Sadly, starting from day one my medical rap sheet is a yard long. A doctor recently expressed dismay upon reviewing the list during a check-up, saying I’ve “been through enough.”
In the new millennium, things got especially grim – an especially bitter chapter of my MG identification pre-story. I had to have emergency gall bladder surgery. I feel blessed that the anesthetic did not cause complications, as special measures are required for MG patients. Employment became physically very difficult, adding to hanging on by a thread mentally from the stress of continually pushing through illness, and being forever treated by doctors (along with other, closer people) like I was “just crazy,” seeking attention, or just plain lazy.
Regarding all of this: It’s never been a goal of mine to fake illness, and I am offended by people who say they are “jealous,” when I “get to stay home.” They take so much for granted. Even this blog is meant to be informative, more than a journal of “aches and pains.”
A Telling History
By the early-2000’s I could hardly move off the couch at home. I was still a long way from the Myasthenia Gravis diagnosis. At work, I used the break room couch intermittently for naps. My staggering depression became debilitating. I deal with the condition, a PTSD diagnosis, extreme anxiety (and variables thereof) to this day. I will not go into that here, other than to say I suffered early traumas and got caught in many other bad situations throughout the years. Through not recognizing abuse coupled with horrendously low self esteem and lacking knowledge of a person’s basic rights as an individual, I repeatedly wound up with manipulative, toxic people in my life.
This history and psych diagnosis is a monster to deal with and greatly limits my normal functioning in society. These stressors greatly effect myasthenic symptoms. Many patients with an MG diagnosis deal with depression. The link between childhood trauma and later Myasthenia Gravis is examined here. Through the combination of all of this, I broke down completely and had a decade of sheer mental and physical hell. The term “basket case” was once aptly used by a counselor.
Then there’s my mystery illness link to MG: I was sick for a year in my teens with what doctors at the Medical College of Virginia declared to be a “self limiting unidentified virus.” It was said to be similar to the Epstein-Barr virus, to which an MG linkage has been found. I will write more about that in a future blog entry.
There was a glimmer of hope when a hometown neurologist decided to send me to the Cleveland Clinic. I in no way expected a Myasthenia Gravis diagnosis, but I had hope something would finally be figured out. When I made that appointment I was at wits end. I had a gut feeling that neurology was the right direction. I was also having strange pain and odd sensations in my head (which were not MG related). At that neurology appointment I had trouble explaining more than the abstract notion of feeling terrible. I did not understand my symptoms enough to describe them.
During the examination I had a limp, which I had never noticed. The doctor picked up on it. This is still a very typical symptom of mine. I was and still am so used to living with symptoms that they do not always register consciously. This initial neurologist ordered an MRI. The only thing I remember specifically about the results was that it was said to show some hydro-encephalitis. I still don’t know what in the world that was about, and nothing has been said since. I was off to the big guns.
A Jerk with Credentials
During the Cleveland Clinic scheduling, I was asked if I would agree to seeing a doctor’s assistant. I thought and responded “only if I must.” I felt this would leave the decision open to the hospital, but express my preference. I was exhausted after all of the dead end streets and was trying to stack the cards in my favor. My dearly missed, late and long suffering mother flew with me to Cleveland.
Much memory of the visit is blocked, as is wont to happen with bad experiences. I just know that when I saw the doctor (who I suspect was not happy about me specifically wanting *him* that day) started off edgy, and then flew into an utter rage when I had a hard time naming specific symptoms. Fatigue and feeling awful were apparently not a big enough complaint for this clinic, although in hindsight the Myasthenia Gravis diagnosis definitely was. He yelled and cussed loudly, “why are you here if you can’t even name your symptoms??!?!?!?!?!?” I wish I had heard of patient advocacy at the time.
I was terrified. A doctor who has it in for you is not a good thing. I had been so anxious about the appointment that I had made a graphic of key points the referring neurologist had brought out. That was in case I didn’t have the courage to speak. It was daunting. I suppose that didn’t set well, or maybe this “top doctor,” like most others, only saw the face value of a depressed, fat woman with her mother and made up his mind. I will never know.
I quickly ran out of the room to the bathroom and broke down and sobbed in relative privacy. I guess my limp wasn’t exhibiting that day. Maybe nothing was. MG is not constant or consistent. It is ever-changing and in many ways unpredictable. It is unique in every patient and therefore nicknamed “The Snowflake Disease.” That’s another reason diagnosis can be so difficult. Afterwards at the Clinic, I saw other supporting doctors who, from their recommendations, also concluded that I was simply fat and “mental.”
Many people close to me were incredulous about my experience. I guess at that point I was so used to folks coming up with the wrong conclusion about me in general that I was somewhat numb and resigned to it. The hard thing is convincing yourself not to internalize these nay-sayers. It’s important not to lose yourself. That in and of itself is a special Hell.
The following years were a downwards spiral of continual doctors’ appointments. The Myasthenia Gravis diagnosis was still the holy grail. None helped my fatigue and underlying symptoms. As wonderful as exercise is, it is not always the best recommendation when symptomatic for MG. It was the number one doctor recommendation. I tried my best, Virginia Summer or not. I scraped and scraped by. When I did manage to get up, I spent most of my time at the computer, trying my hand at computer graphics – less physical than painting or my beloved textile design. It’s so important to have an activity to distract oneself with – some way to look “out” and “ahead.”
A Diagnosis, At Last
Somehow, by sheer providence, I met my husband online as the decade started to wane. In the process of moving to the DC area I had still employed my hometown psychiatrist who was also a neurologist. I’ve been through enough terrible medical experiences (on two continents) that changing doctors is daunting. Near one of my last appointments with him I told of often waking up seeing completely, widely separated double. I love my husband, but am not sure I want to see two of him. I mentioned this to my psychiatrist, and he said to go to a neurologist and get a scan.
I decided to make the move to find a doctor in Northern Virginia. After an MRI showed no brain tumors, or the like, I was tested by my new neurologist for a possible Myasthenia Gravis diagnosis. He proclaimed it “was a leap.” I had never heard of the disease, so it didn’t mean much to me. I thought it was probably just another mundane item for my medical rap sheet. The leap landed solidly. The blood test for MG was positive. I was nearing a diagnosis.
An EMG/Nerve Conduction Study was administered on the day my blood had been drawn. In this test, your extremities get shocked in quick procession to measure nerve fatiguability. See a video of the process below. I do not endorse Hattiesburg Clinic, who may be perfectly wonderful. I am using the video only to illustrate the test procedure.
The test wasn’t pleasant, but also not excruciating. It was just kind of an odd, fast, repetitive feeling that went on for about 40 minutes, by my husband’s assessment. I did my best to mentally zone out during the process. The blood test that followed that day was easier, but costly.
The next step got relinquished by my doctor to a neurologist at Georgetown University Hospital. He has locally been called “The Myasthenia Gravis God” by yet another neurologist I visited. Hmmmm. I can’t help but notice I’ve named 6 neurologists in this article alone. Getting the picture? My doctor had been on the fence as to whether to get me to do a single fiber test for additional verification. Thankfully, Dr. “MG God” was conservative and said the blood test would do. I was very relieved. The single fiber test sounds awful to me. Think of the above test, but with a metal fiber inserted directly into a muscle (from what I have read).
I finally had a correct Myasthenia Gravis diagnosis.
The Next Step
It was quickly decided that I should have my thymus out. At the time it was still a somewhat experimental notion that has gained ground in the past decade. The thymus is a gland in the chest that usually shrinks to a mere nothing after puberty. MG patients often have an enlarged, tumorous thymus. It is suggested that having it removed improves the patient’s chances of not progressing to worse symptoms. A thymectomy can even promise improvement of current symptoms, even into remission. I was once again lucky for having gone to Georgetown University Hospital for all of this, because there was currently a surgeon spearheading endoscopic thymectomy surgery, much less invasive than the other option of trans-sternal thymus removal. She helped pen this paper on the subject.
The operation went well, and I hear the scar looks great. I ended up staying one night for low lung capacity after the lung collapsing process for the procedure. I’ve never been one to bounce back quickly. Most people think I’ve had thyroid surgery, but the scar is actually a good deal lower and wider than would have been caused by such. I started on a regular regimen of Mestinon, and everyone was happy. So far the Myasthenia Gravis diagnosis was in the “very treatable” realm.
MG patients: If you want to have fun, keep track of how many people can actually say “Mestinon.” Have further verbal adventures with the generic “Pyridostigmine Bromide.” Hey – You have to get your giggles where you can.
Along the way I switched to “The MG God” for my regular check-ups. It’s a bit of a hike, but this doctor has never kept me waiting 2 hours after a silver covered platter got rolled in for him to sup on, while reception mumbled things along the lines of “he’s doing it again.” Nor has the current neurology staff ever left me waiting in a room, forgotten, after the doctor has long since left for the day. Ahhhhh yes. Fun times.
A Welcomed Hug
I did show improvement post-thymectomy, and my husband and I were able to have some grand adventures. I even got a huge hug from an artist idol, Isaiah Zagar, when we visited Philadelphia’s Magic Gardens – The Gardens are an affirming and inspiring location of respite for me to this day.
Zagar saw me with the very fresh scar and was impressed that I’d made the trip. It was like unexpectedly stumbling on a dream in the middle of Philly, when we happened upon the South Street location. We did not know it was a lot open for touring and wondered what gnome or wizard might live behind the gate. For me it was art therapy and an illustrating experience of how I strive to forge forward instead of crying in my soup. Years later I showed this master my portfolio, and he sent a very kind letter with a drawing and the encouraging words “Keep on keeping on.” That’s where things stood for about five years. But not all good things last.
On May 1 I had my first ambulance ride, rescued by EMS, nearing Myasthenia Crisis. I’ve been inspired to share Myasthenia Gravis information from a patient’s perspective in this blog. My “too close to myasthenic crisis” story and blog kick-off follows.
A Pre-Crisis Myasthenic Flare Story
On May 1 I had my first ambulance ride, rescued during pending Myasthenic Crisis after a lengthy Myasthenic flare. I’ve been inspired to share Myasthenia Gravis information from a patient’s perspective in this blog. My nearing myasthenic crisis story as a cautionary tale with advice of symptoms leading to myasthenic crisis, and symptoms MG patients should heed in deciding to go to the hospital to avoid Myasthenic Crisis
A Somewhat Rare Disease
Calling the rescue squad is a true way to make May 1 live up to its May Day moniker. Fortunately, the fine EMS crew arrived quickly and did a wonderful job in keeping a terrifying situation calm, while getting me to the ER before my neurological strength sunk further below the 2 it was hardly reaching. The hospital notes stated I was nearing Myasthenic Crisis – a condition which requires intubation, as the body no longer has the muscular function necessary for breathing. This is a fancy way of saying you’d be dead without a medical team and breathing equipment.
I have Myasthenia Gravis, and it was catching up with me quickly with this myasthenic flare. You see, I was lucky to respond to relatively minimal treatment for years, since being diagnosed in 2009. Well, minimal if you count having your thymus removed as “just a thing,” and dealing regular cane use and double vision from a few years on while obeying the P’s and Q’s of living with the disease.
I somehow find it amusing that needing to go to the bathroom might’ve saved my life. It was the reason I woke up. I was dismayed to find that I could just barely talk with a gravely voice, and couldn’t move, other than having just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.” I was helpless.
I had been admitted for an initial IVIG induction being admitted from the ER during another myasthenic flare a month before, and it had been a rough ride since then. In great fear of another hospitalization (long story) and the thought that my next treatment was nearing, I railed against my neurologist’s good advice to go to the hospital for another dose of IVIG after he had received an e-mail where I described my drastic symptoms.
I had the big idea that I’d power through, when I was making Froggy on “The Little Rascals” sound like a Soprano diva, practically needed a seatbelt to stay in any chair or recliner, had no neck support whatsoever by day’s end, and was having an irritatingly regular occurrence of choking on dinner or drink throughout the day. Choking just so on spit was also common. This on top of minimal arm strength and walking a bit like Frankenstein. As my breathing count on one breath got smaller and smaller as days went by after treatment, I tried to hold out. I was lucky to get to 20 at the best point in the day. There were periods of time when my eyes would simply not open at all. I can be very stubborn. MG is more stubborn than me. Every time, MG is more stubborn than me.
Help on the Way for Pre-crisis Myasthenia Gravis
The EMT arrived very quickly, oxygen and resuscitation equipment in tow, necessary devices for treatment of myasthenic crisis. The team navigated the course of loading me onto a stretcher and then down three flights of steps (sorry guys!) into the ambulance. I was asked how I deal with living like this, up so high. It had never been quite that bad before! Otherwise I’m a pretty determined (and yes, stubborn) cookie and hadn’t let difficulty with steps at varying degrees stop me. I was ushered out to the light of dawn and sped to the hospital. I was extremely grateful for the EMT’s help in rescuing me before I declined all the way to myasthenic crisis.
My fretting husband followed along in his car, and we left our terrified pup at home. She’s unfortunately very accustomed to me being sick, but not to a hoard of dark-clad figures coming by when we should all be sleeping. As a matter of fact, she took the whole thing very personally and didn’t want anything to do with me for days after I got back home. I promised her I’d avoid further myasthenia based hospitalizations as best as I can. She has since forgiven the traumatic event. I have done my best to get on with life after that forced restart.
During myasthenic flare nearing myasthenic crisis, even when outwardly immobile and unable to talk, patients remain lucid. I heard everything that went on. Whether the patiet’s eyes cooperate and provide decent vision depends on the incident and the person. I might’ve seen a total blur, or double vision to varying extents. My eyelids might’ve refused to open at all. This time I could keep my eyes open for decent periods of time and keep up with everything. I cannot imagine how much more terrifying it would’ve been without vision. I cannot imagine how much more terrifying crisis and intubation would have been.
A Crucial Question
I figured the best thing was to stay calm, because nothing will lead down the wrong course as quickly as being written off as a panic attack. I had been in the ER before in more minor stages of nearing myasthenic crisis and knew the drill. MG symptoms also worsen with stress, and being misunderstood is always stressful for me.
I took this golden opportunity to ask my EMT caregiver whether the fire department does drills at a certain time on Summer nights. Even though I doubted it, my husband and I noticed recurring sirens at 9 pm each night for a while. I like to take advantage of the opportunities that present themselves, and have a long tradition of asking the question never asked before. This earned a recorded comment during stats notation that I was “very amusing.” If I’m gonna go, I might as well keep my sense of humor. Sometimes it’s the only thing you have to hold on to.
At the ER my neurological strength was barely 2/5. This is what myasthenia is all about. 2/5 means you can only twitch a little. My breathing was very weak. My heartbeat was slow. I felt like I was sinking – as if I would disappear into my gurney. Not quite as dramatically as the scene below and definitately not involving Freddie Kruger, but still.
I still had to pee! When it came time to take my MG medicine from home (Mestinon / Pyridostimine Bromide), when asked, we said “it helps with nerve / muscle communication.” My poetic and philosophical nurse didn’t miss a beat, exclaiming “THAT sounds like a very good thing!” His recitation of verse by Greg Allman was extremely comforting. In the ER, you do what you do to get through.
How I became a Gourmet Vampire
The ER was put in touch with my neurologist and I was started on a drip of IVIG – an infusion of concentrated human antibodies – usually good as gold against further nearing myasthenic crisis. I had started IVIG a month before, making me a sort of gourmet vampire. It had been a suggested treatment months before that, before any myasthenic flare for worsening mobility symptoms. I only take choice parts of the blood.
In the course of my visit, I stated I’m on good terms with the greater power (I am spiritual, but admittedly not the biggest fan of organized religion). If I hadn’t yet queued in as to my condition, this was a bit of an eye opener (no pun intended – I still couldn’t do much visually). I was aware of someone coding in another bay, and thanked my blessings to still be alive, while also thinking privately “here we go again.” I’ve had my share of health drama. At some point during the morning I was transferred to my own doctor’s hospital to continue the IVIG treatment, and was admitted for 5 days – one more day of treatment and then time for improvement.
My Own Daytime Hospital Drama
It took until the second hospital staff shift during my stay to convince all workers that I truly could not walk, while my husband was finally getting some rest at home. MG is an invisible disease, and even though I could stand with much difficulty by that point, forward motion other than falling failed me. Eventually a special chair was procured to save my caregivers trouble getting me across the few feet to the bathroom, and to save me stress. Note to MG sufferer’s families: Immediately ask for the Sara Seat. I was on choke risk status for 48 hours, but didn’t have any appetite either way.
I saw a neurologist once a day for about 5 minutes tops (occasionally more if colleagues were present to halt his exit). Otherwise I saw nursing and tech staff. In general, there was simply not much information provided. The future was a big blank of “well, this is the usual treatment regimen, and most people improve” type talk, but no certainties were given whatsoever. It seemed only to be important to this young doctor that I was alive. It was daunting to think that alive could possibly continue in this helpless manner, when I had gotten by thus far with no major crisis. I guess it was finally time to gather my own first-hand information for this Myasthenia Gravis story. I hadn’t planned on writing one.
There were blood tests to see if any unidentified illnesses had led to the flare. There were none. Questions about my stress level were top on the list, and I know my dear husband was probably suspect. If I tried to address the stress of the hospital and dealing during the past month with scraping by after an initial, non-EMT involving ER admission and hospitalization for myasthenic flare on Easter, my statements were shrugged off. Having no information is extremely stressful to me. Face planting on a bed, because a non-MD staff member doesn’t seem to know your condition is also stressful.
Through all this and double room drama, there were really more good staffers than the few star bad examples forever burnt into my memory. They seemed to have a similar life philosophy, for which I was thankful. Within 5 days I got to where I could stand up to use a walker with extreme difficulty. I could take inch-long steps then. I was being routed into in-patient physical therapy, but was emotionally kaput, stressed out, and missing my dog. I traditionally do not do well at all in hospital settings, and not in the “everybody hates the hospital” kind of way. I also now know that the CellCept I had been taking for a month was fueling high anxiety on top of an already well established fear of hospital admission.
Finally, with a bit of finagling, I got the go ahead from my own neurologist to go home. Getting up 3 flights of steps took over an hour, but like I said above, I’m stubborn! When worried neighbors passed by me resting on the chair my husband placed on the landing, I just said I was a troll and demanded money for their safe passage. As I wrote earlier, I try to make the best of situations, and humor is a must. It definitely broke the tension.
That was the most terribly spectacular day of my history with MG. I was lucky to avoid myasthenic crisis. The other most spectacular day was in late July, when I took my first purely recreational walk since May 1 in an air conditioned mall. MG and heat do not mix. On the vernal equinox (that’s September 22) I took my first recreational walk outdoors in cool mountain breeze. Had I not been so lucky as to get to the hospital in time, actual Myasthenic Crisis lays you up for much longer.
There were other scares too and so much to learn about the condition. I have experienced a myasthenic flare again since initially writing this about a year ago, but the symptoms did not progress to such an extreme. Even getting diagnosed was a long, awful process with many misunderstandings. Most people have never heard of the disease and many doctors are very hesitant to deal with you for other maladies once they see your MG diagnosis. It’s complicated. Sadly that’s a part of every MG story.
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